Spoons!

Well I have been a busy bee. Its been Take That concert season and guys, guess what? I did it! I had the best time. It was very emotional, I was very worried in the run up, that I wouldn’t be able to manage. But I did!

But for those 2 hours of music I felt more like myself than I have in a very long time. I couldn’t dance like I wanted to, but I have a good thing going with my stick now and sat down a lot. But I did it. It was an immense achievement (piccies below of my excited pre-concert face!)

We did have some disasters along the way. My machine decided to break whilst we were in Sheffield on the Friday night. Post-concert, when I needed it the most. The air bit still worked but the humidifier part broke. So I had to make do with cold air blowing air into my lungs. Pretty quickly my lungs dried out. It was agony. But the alternative of missing treatment was not an option.

Of course, it was weekend and the clinic was closed. By the time Monday morning rolled around, I barely had a voice, couldn’t sleep and was in pain. We then had to undertake the 3-hour round trip for a 10-minute appointment. Oof.  It took a good 5 days to get back on track. Just in time for concert number 2!

Now the fun is over I am all about recovery. Sleep, some writing maybe, and definitely more sleep.

In my last blog post I talked about the writing challenge that I have been doing for the month of April. Its been fairly versatile the challenges each day. Could be a word, or a subject or even a video.

One of the pieces I did was around the word prompt for spoons and given that I have had some nice outings recently it felt relevant to share here too to give an insight into what it means to manage your energy levels when you have a long-term illness or are unwell.

Some of you will be familiar with a lot of what is covered in the piece as its things I have touched on this subject before. As time goes on I have become better with saving spoons, listen to my body, and rest as much as possible.

This piece was called Saving Spoons:

20 months ago, a spoon would be to stir a cooking pan, to eat my food or to drip feed information. I had to do that a lot in my job. Pass on information, knowledge transfer, a bit of training. It was all part of my busy daily role. Busy busy life, busy busy wife. I had the odd bursts of bad health along the way and had a pair of naughty lungs who liked to misbehave.

Then overnight my health broke down and suddenly a spoon was no longer all of those things it was before. It became a metaphor for my life. For my energy and what I could cope with in a day. I could no longer work, walk anywhere or some days function at all. I was reliant on breathing machines and staying away from any germs so as not to get sicker.

My first thought of the morning now on waking is; what can I cope with today? How many spoons are available to me? Some days I am rewarded with a manageable amount, some days very few.

Life isn’t spontaneous anymore. I even have to plan when I wash. I can’t suddenly decide for a day out. I have to plan my breathing treatments, what food I can manage to prepare and even what I need that day from upstairs so I don’t needlessly have to re-climb the stairs again until bedtime. Its hard work. It takes up a lot of space in your head, it’s confusing, tiring, upsetting and I’m fairly sure the planning of the spoons uses spoons itself. Irony.

Some days I can manage more and if my spoon gods are looking down on me, I actually get to follow through with plans I have made. To go from a busy person, social, to managing spoons was a shock. It’s still a shock now. Some days I have more spoons than others. Some days I have no warning and suddenly there are none left. I crash in the most awful way and quite literally have to be put to bed. Aged 41. Like a child who ran around on a sugar high and falls asleep where they stop.

So meticulous spoon management it is. I plan them as carefully as I did my projects at work. Showers, allowing me enough of those spoons to dry my hair. Not even to get out of the house. Just to get out of the shower. Just to dry my hair. Sat on the bed obviously, always saving spoons.  I have to use a wheelchair if I want to go further afield, or drive somewhere and be parked directly outside. Don’t be wasteful!

There won’t be a time in my life where I don’t need to manage spoons. Some days they are my friends and some days my foe. I resent them and revere them in equal measure. I have learned the shortcuts to doing things to conserve as much ‘spoon-age’ as possible and continue to learn almost daily.

What I do know though, is that without that management, that analogy, that knowledge of what my body needs I would find it virtually impossible to any kind of a thing. I guess in some ways I need to be thankful for those pesky spoons.

Thanks for reading everyone. Speak soon…. x

Finally February…..

So, in a very nice turn of events a few people have asked me if I’m still writing my blog. I think the regularity had slowed down. I had been updating almost weekly then slowly with being unwell again and I started to feel that I didn’t have anything to contribute.

Then those little demons that sit in my head start to make me question if anyone was reading it or if it was still having an effect. I also think that Facebook is playing silly buggers as it does, showing about 2% of people you follow and their posts. All I see is bloody adverts or posts from things I don’t even follow! Boo you book of face and your weird algorithms.

Anyway, people having asked has given me a little incentive to get moving and try and get into the habit of more regular updates. Particularly now the longest January in history is over. I have missed updating and writing in general so here I am with ‘Finally February’.

In summary all is ok. The end.

Only jesting! Generally, all is fine. I am plodding on, continuing to try to swerve germs and busy places as best I can to keep myself relatively stable health wise.

It’s a tough one and I touched on this in my last blog. The less you do the less you want to and I feel like I am a cold car engine gently spluttering back into life. Needing plenty of coaxing and warming up before I bunny hop (not literally obvs) into any activity!

February is my birthday month though (hurray!) so I inevitably get a bit giddy and excited. As the hubs says I am like the queen with all my plans and different arrangements. He gladly socialises with me of course despite this! I have a night away going to see Les Miserables in Manchester, some lunches out and about and the old faithful birthday Christmas dinner. One of my favourite parts of the birthday calendar!

I can’t even remember when it started exactly but feels as much a tradition as my birthday. For as long as I can remember it’s my most favourite meal of the year (Christmas dinner) so would always ask for it again at birthday time. Mum, Dad and the family do me proud, turkey, trimmings, trifle and even leftover crackers. Christmas part 2!

I have continued to have appointments with the extensive care team. The service is so good I am in shock how quickly they have got things moving. I am starting on some new pain medication to see if that can be a bit more under control and they are making some adaptations in the house to help me get a bit more sorted.

I will be starting on a rehabilitation programme to help me build up my strength and to get a little bit of gentle exercise in to my routine. There will be professionals there who understand and know what its like to exercise with breathing conditions so it will be safe and hopefully give me the confidence and help I need to get started and find what it is I am able to do on ‘well’ days.

I’m also going to be seeing a wellness team to help get me out and about more on my own. I can and do go out alone but only nipping to someone’s house or meeting up somewhere. To go out and complete an activity on my own is virtually unheard of these days. Apparently one of the many things they do is help build your confidence to get back to living life a bit more independently. It is very hard to explain how much being poorly strips your confidence. Even at doing the simplest of tasks feels too hard some, if not all, days.

To say this is giving me some light and something to focus on is an understatement. Just the support I am getting, the interest, the help from people who understand breathing issues. Makes me feel like I will continue to get little aspects of the old me back bit by bit. She’s buried in there somewhere, and continues to emerge, bit by bit.

Stay well everyone… until next time… x

 

SEE BELOW:

P.S. if anyone wants to you can follow this blog through your email rather than relying on the demons on Facebook or others social media sites you can subscribe to my blog and get email notifications when updates are made if you so desired.

Or, if you fancy throwing out a like or share across the social media platforms it would be appreciated. I am not in this for the popularity contest but would like to try and reach lots of other people out there who might be suffering with similar issues, feeling a bit unwell and down themselves or to reach those who might just like to read about a short redhead who has weird lung problems, a knack for being a bit waffley and a penchant for the exclamation mark!!

As ever thank you for your support.

 

Its all about balance…

So, I woke up Monday morning and thought what am I going to do with myself today. Not what can I manage, I’m sad or in pain but what can I do this morning?

It took a chat with my mum and dad to realise that this isn’t actually a bad thing. I am not sad by waking up on a Monday and not being at work. Something has shifted and my first thought wasn’t about a negative emotion it wasn’t about how things have changed, feeling sad, needing to conserve energy. It was that I wanted to do something and wanted to get out and about. What a lovely change!

So, puppy, Rosie (the new walker) and my dad and I we all went for a little walk. It was nice and sunny and so was my mood. The fog is lifting.

I have had a busy time of late with extensions, and dealing with leaks and annoying window people but have also thankfully started to being a bit more social in the daytime around my treatment. All of this has started to change how I feel about everything. Sometimes it takes someone to stop and remind you that things have changed to see the very small positive shift in your life and your thinking.

I think something happened after I published my last blog. I am not sure if it was because I managed to finally get out how I was feeling into words, or the sheer act of publishing my blog but my mindset shifted again. For the better.

It feels like with every little achievement, and every new thing I challenge myself to do I feel such pride at even the smallest of things. I am not giving in to this. I have not been able to walk out from my mum and dads house since I got so poorly over 18 months ago and today with the help of Rosie and dad I did it. I didn’t notice or realise the milestone until it was over. It felt so good and I felt so proud. I am enjoying being able to use my legs just a little bit and enjoying some winter sunshine even if it is with a walker. I can’t get far but it’s about gaining a touch more freedom and independence which is always going to be good for the soul.

As my lovely friend who I met for coffee last week told me that perhaps publishing ‘Project Ange’ blog was a cathartic experience and would help me to move a few steps forward. She was right.

I have also started to think about this whole Project Ange thing and what it means. First step is my brain, I need to get it firing again. I definitely want to do more writing, not just this blog but in other areas too, just for me because I enjoy it so much, so I am starting to explore what is possible for me around this illness.

I need to be reading more books and get my brain working again, fire it up with some good reads (all recommendations accepted except horror stories – can’t cope with the nightmares!). Reading gives me such personal joy that I need to prioritise it (over watching Friends and Grey’s Anatomy on loop!). I think eventually I might do something a bit more academic but for now nothing with any pressure or deadlines is working for me.

Other than getting the brain working and small walks on the days my body will allow, is the challenge of weight loss. It’s very slow and steady wins the race as my body is pretty much ravaged by steroids from the last 15 years. I am taking my time. I will get there. I am almost at a stone and a half down now and much more to go but I am finding out how to balance losing weight, being social and sticking to what I need to do to keep me well.

It’s all about balance and this is going to be the case moving forward in all aspects of my life and working towards finding that balance will always be the challenge.

Following my OK day on Monday, I was hit with a bad asthma attack and airway collapse on Monday overnight. I’ve been very tired, in a world of pain and resting up since then. All plans and life put on hold. It has been hard but I knew it was due so wasn’t a shock. Long term illness doesn’t allow you to get cocky. It pops up and reminds you that your life can only be planned to a certain extent and nothing can be taken for granted.

This isn’t an illness that will improve. The only things I can improve is my reaction to them. Understanding my limits (always changing) and reacting the right way when this happens. So, all plans were cancelled, I have been sleeping lots and I am currently best mates with my packet of painkillers. It’s a temporary blip and for the first time I haven’t panicked, am leaning into the skid and just going with it and laying low! It doesn’t feel like the end of the world where once it previously has done so I am clocking that down to a win!

Until next time….

And Rest.

So today is a rest day. In life before this would only relate to gym activities. Well not for me, I wasn’t ever really a gym girl.

Instead my rest days are like a reset. If I’ve had a couple of days being busy. Which is like about 85% less busy than I used to be, my body gives me weird warning signs. Or if I have something planned and need to have all my energy saved then I deploy a rest day. Then I can go out, be a bit normal and enjoy without fear of next day pain punishment. Some call it saving spoons (see picture). I call it a reset day.

Some days I can call it in advance, make myself stop. Other days it announces itself. That happened last night half way through the England game. Rude. I took a swig of my gin (even ruder) and then it happened. Full on airway collapse. No sign, no warning, just away we go.

Imagine you get some food stuck, or drink something and it goes down the wrong way. That. Except a lot more painful. You gasp and cough with a ferocity you are scared is going to release another bodily function (not yet happened for me but for some ‘the cough’ can cause sickness, piddle in the pants, plus all that gloriousness and more!) As if you aren’t suffering enough they add that indignity to the equation!

So anyway I digress. Big swig of gin = big airway collapse. Not fun. At all. There you are all ‘it’s coming home’ singing along to vindaloo, having a brill evening and then BAM! Smack in the face (well smack in the airway more like). How rude to be enjoying yourself. Thanks for that TBM. Reminder noted.

So, for the remainder of the game, gin was replaced by hot honey and ginger. I know, super rock and roll. Thank goodness I was at home. If this happens in public it’s so embarrassing. People look at you like you have the lurgy and also the not being able to breathe isn’t fun when people are watching. The thing about honking coughs and choking is that people do tend to look. And its always at those points you wish you could invoke the invisibility super hero power pack. Or have Harry Potter’s invisibility cloak. Either would do but I think the cloak would be cooler.

Another thing about the coughing you do after your airways collapse is that it rips your throat up. It makes you feel like you’ve been run into by a HGV and gives you this nice long lasting burn in your chest. Not forgetting the tickle which is so bad you think you’ve got something lodged in there. Your body then coughs more as a way to emit whatever it thinks is causing it. But it being your airways and all, it causes quite the vicious circle.

The thing about chronic conditions is you go on quite the learning curve in order to read the subtle and not so subtle signs your body gives you. In this case it’s not like you can ignore them even if you wanted to. Not in my case when a warning sign literally comes up and chokes you.

So, today is my reset day. I’ve had a nice coffee, nutritious breakfast, lots of water. I’ve sat and watched a trashy film whilst doing my treatment. Lazy but crazy puppy is playing along with me today and has spent much of the morning snoozing. Hurrah for her. This afternoon will be sleep, read my book and more treatment.

Sounds like a delish day doesn’t it? And it is. I’m not nuts. Before this I had just described an ideal day (minus the breathing machine obviously). The type I wanted when I was knee deep in plans, lists, endless meetings and emails at work. And it is ideal. As long as it’s only once or twice a week. If those days start to become the norm they get boring. Fast. And the joy of them is removed. A balance, even with chronic illness, is needed.

So, to summarise, even though today is a bad day. It’s actually been a good day.

….Well it made sense in my head.

Laters….